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Caregiver-Spouse with cancer is mad at me

allackey

Posts: 19
Joined: Oct 2009

Jan 27, 2010 - 12:05 pm

In October I posted the same subject; but now that my wife is at the end of her chemo I now need some caregiver support and advise.

After her last chemo, she has portrayed me as "not being there" for her, being basically selfish, and delegating duties to others. She said she just wanted me to be there for her. I did go on a missions trip and it was something that she supported and told me to do at the beginning. I was absolutely blindsided by her feeling and statement. In my eyes I have been there, and have considered it my honor to care for her. I have taken care of us and our children and have done it with care to be humble to be sure that nothing is "about me". The bottom line is that she is truly so far from the truth, that I want to find out if this is typical to go through.

I wonder if deep down she is coping with the fact that I don't "have cancer too" and in that respect am not with her?

Wow! Has anyone been blindsided by their partner with cancer? I feel like I've been hit with a 2x4 board!

I am so sorry for the pain and suffering that everyone here is describing.

I am suffering greatly for a similar but also different reason.

My partner, 40 year's old with metastatic neuroendocrine cancer to the liver pulled away around the time they gave him a terminal prognosis.

He tried to stick around as a friend, but his messages were brief and controlled.

He was abandoned as a child and has always relied on himself, I believe this disease just increased his character of being hyper-independent.

Throughout our journey together as a couple, we had about a year of great moments free of the burden of his disease. He was generally stable and was able to cycle (his passion, he is an athlete), work (he is an aerospace engineer) and travel. We travelled together, spent time together emotionally connected, and planned a future (despite the uncertainty) together.

As soon as the news came in that he was terminal (less than a year to live), despite being relatively asymptomatic (his disease was confined to the liver and causing very little symptoms) he started to rush through the steps of what was important to him (working longer hours, cycling, working as a leader in a support group caring for other patients that were worse off than him or newer diagnosed). He relegated the relationship, stopped cycling with me, and started to see me only once weekly. I respected most of this, with a few moments of breaking down asking him to please include me more because it was incredibly painful to feel like I was going to lose him but that he took so much pride and energy in everything else but me. He just looked at me and said "you knew this was always who I was"

Don't get me wrong when you think of my writings as selfish, I had amazing moments of connection with my partner, he is an honest, caring (in actionable ways that made him really feel like he was listening to me and cared for me) and he changed my life for the better.

Now that he is very sick, he has shut me out completely (I did do things that upset him along the way, like becoming very emotional once or twice and trying to force him to talk about his illness and choices re treatment with me before he was ready, calling doctors for second opinions and setting them up without him asking me to, once knowing his results first where I could have avoided them, and then calling his close friend when he shut down completely and isolated himself, and was requesting absolute privacy) and he blames me for these above incidents to the point of not being able to let the feeling of betrayal go and allow me into his life again. I have apologised time and time again and asked him to please let me be with him at this difficult time (he has almost lost all of his independence at this point and is showing signs of personality changes). His response is that he can't let go of my "mistakes", and that I really never heard a word he said about who he is (the type to care for himself and need to shut down without others around when he is struggling most)

When he first pulled away, I felt an incredible amount of guilt and questioned every decision I made that had caused him this mistrust and withdrawal. I wondered if calling the doctors or his friend etc, really was a true betrayal and asked him how to fix it. I asked him if he could please meet me halfway by not shutting down completely so I didnt have to panic and impulsively act on my fear and do things that make him feel like he's out of his control of his life. He said he did not know how I could fix it, or if he could help the prolonged shut downs because it's the only way he's ever known how to cope, and he doesn't know when the emotions of being betrayed may subsied, and to leave him be until he needed something. We went to therapy but he just sat there frozen not saying what he was feeling, or blamed me for "chasing him" since his diagnosis, and not respecting his wishes not to talk about or act on his illness/treatments. I cried and tried to explain to him that fear of loss and disconnection increases fear, and maybe even more so for me as I have experienced significant loss in the past. I again apologized during therapy about how I had over-reacted to my fear and tried to force him to talk to me about his illness and future treatment options against his will. He just ended therapy and then the relationship before the therapist could speak to him about what he needed or wanted.

Ultimately, there has really been no place for my emotions since his terminal diagnosis eight months ago (but I had respected that despite it hurting until he went completely silent, or on occassion where I made my need for more closeness and communication known (likely in a way that was not productive as I had held it in for so long)

After a month or so of silence, he reached out again, apologizing for pushing me away (this has happened about six times before) this time describing his childhood issues of feeling betrayed and controlled by his family (and then fully abandoned at the age of 14) and how he could sense that his mother derived pleasure from seeing him weak in the opposite way a parent should feel when seeing their child down. Instead of loving him selflessly, he felt her love came from a place where she derived too much emotional happiness from the control of him or seeing him weak. So I did (and have always instinctually) understood that his behaviour or feelings were not all my fault and to tread carefully with the display of my emotions or desire to care for him in a way that felt right for me. I owned my part during this conversation and I thought that this conversation had ended all of the difficulty between us that we were unable to communicate about in the past. I thought that we would move forward together no matter what, because I was and always have been committed to seeing him through no matter what. I know in my heart I do not derive pleasure or purpose from seeing him weak (despite seeking a life of purpose and heping others in the past). That our relationship was very different than what I had experienced in my past. That he likely is the love of my life and if it wasn't for this cancer, we would have continued to be really happy together despite our differences. I believe until the terminal diagnosis he was really committed to not letting our past interfere with our future and working things through. I may be wrong but the one thing I do know is my love for him, desire to see him well, take away his pain, even give him a part of my liver if I could, is very strong. Also, that I have always seen past the cancer to the man that made me feel loved, safe, wanted, that I respected so much for his integrity, intelligence, whit, drive, athleticism, and his capacity to take care of me or accept me in a way that no other has ever shown. For these reasons, I continued to work, exercise and study during these past few months and difficult shut down/break up periods, because I derived strength from having witnessed his own capacity to continue work, exercise and pursue meaningful endeavors despite his own uncertainty and from the happy memories of our relationship. All of this, has made me a stronger person. Of course, because of loving him and knowing I might lose him, deep inside, all I wanted to do was quit everything and be by his side.

I spun so many scenarios while coping, much revolving around the theme of guilt that if i I had just been a better girlfriend, listened to him verbatim, never panicked, never took action against his wishes, that I would have made life easier on him. The guilt was immense, and I felt like I was drowning in it. I took medication to ease the pain, and continued on. Finally now, and especially reading the above pain of other caregivers, I wrestle less with most of the guilt at not having been the perfect girlfriend. I read an incredible helpful book titled "it's okay to not be okay" which helps with grief. I realised that all of the betrayals he citied were actions of mine he had appreciated in the past and felt loved by. I realised that our world of what "caring" feelings like is vastly different, and to bridge it would have taken a lot of work that it seems due to the cancer, I was the only one with enough energy to put in.

Recently I snapped at him and told him that his cancer was increasing his problems with trust and it was hurting me badly. That no longer knowing how he is or what he chooses has caused a great pain inside of me. He told me he was insulted that I thought Cancer was the problem and that really i am the problem. I am the one that doesn't understand or hear what he needs and am unwilling to sacrifice my own needs in order to give him peace. He may be right, but again, I feel my words were twisted and just stating my own fears and needs sent him back into blame and anger at me.

Now, I have come to terms with the fact that we are once again disconnected and this time, maybe for good, I just wish things didn't end like this. With him citing betrayal and being angry at me for the rest of his life. I wish that I could communicate that I am human, with human emotions, and have him see the innocent parts of me. See that my emotions don't cancel my desire to do right by him, even if sometimes I fail at it. I wish he could see that his conditions of loving him the right way were very hard for me to meet. I am sure he wishes I would just come to understand that his pulling away is not personal and rather the only way he knows how to cope. I bet he wishes I could see how he is protecting me from pain he cannot fix that causes him to blame and lash out at me, and not actually trying to harm me. I just want to sit outside his door until he lets me in so that I can be with him now.

I just want to be near him, with him, or have some closure to all of this. When I hear all of your struggles, a very small part of me wishes I could be the one having hurtful comments hurled at me, just so that I could stand by and be loyal to the man I love. Be present with him. I feel I could be stronger and more at peace if he were just himself and angry and I was with him, than if he were just silent and blaming me, pushing me away and then sometimes calling again.

I want to be able to hang on to the positive memories, the life changing ones especially, and the love and respect I have for him. I want to be able to continue the positive parts of my life, but the grief now is overwhelming. I am watching my loved one die from a distance, alone, I feel helpless, and unable to even be the person he needs, or find closure in the good parts of our lives we shared together.

Thank you for reading this long winded story. I really appreciate it. It helps not to feel so alone.

And if anyone has any thoughts or ideas, I am happy to hear them uncensored.

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